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Help for edema post double mastectomy

msp
msp Member Posts: 6

Bonjour from France and OUF! This gets old really quickly, doesn't it?

I'm 11 days post-op after both breasts were removed (sentinel nodes only removed on the right side as the tumours on the left remained in situ) and muscle expanders were placed under my pectoral muscles for the future reconstruction.

I'm having a lot of trouble finding helpful information about dealing with horrible, roaming, painful, hideous edema on and around my chest. My hands, feet, and face went back to normal while still in hospital and I had all of my drains removed before returning home as they were no longer draining off much fluid in a 24hr period.

We generally have the most wonderful systems in place of volunteers and loads of other resources to help during health crisis here, but due to Covid, there's nowhere to go and I have to remain isolated for the time being with the exception of a chosen few carers. The nurse that changes my bandages daily has said that time is the only thing. She did say that I was maybe trying to do a little too much to early (a friend took me to the grocery store yesterday--ouch, ouch, ouch, ouch, and ouch!).

Icepacks feel good, but change nothing. Resting a lot goes without question. Making a nest out of pillows helps with sleep.

Is there anything else I could or should be doing? Are there perhaps things I'm doing that is, unwittingly, making it worse?

All advice and wisdom is most welcome.

Bon Dimanche!


Comments

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,909
    edited January 2022

    Bonjour Msp,

    What you have sounds like lymphoedema. This is damage to the lymph system after breast cancer surgery. It is very common. Talk to your consultant or nurse about this. There are exercices you need to be taught to do.

    Amicalement,

    Sylvia.

  • msp
    msp Member Posts: 6
    edited January 2022

    Hi Sylvia,

    Definitely not lymphoedema. Just really bad, bog standard, edema.

    As mentioned, my nurse has offered no advice other than it will heal in time.

    Cheers,

    P

  • anniepnw
    anniepnw Member Posts: 23
    edited February 2023

    I'd like to bump an old-ish thread as I am wondering if it might get more responses. This is, of course, for personal reasons. I had my BMX on Feb 07 and was doing fine for a week with both drains still in, until this Wed, when the dreaded post-op edema arrived completely out of the blue. It's uncomfortable on my chest but downright hurting in the armpits. From anyone's experience, how long does it take to get better? It sounds like there's not much the doctors can do; unlike a seroma, I am not even sure if it can be sucked out as it's not just a pocket of liquid, it's everywhere around my chest and pits except for maybe just my sternum. My arms, hands, legs and feet are not affected. One drain is out and I expect the second one will go soon as It's not producing much.

  • pjc5399
    pjc5399 Member Posts: 32
    edited February 2023

    anniepnw - I’m not exactly sure if the issue you are referring to (and obviously, you should discuss with your dr…sounds like you have). I can tell you about my timetable thus far (just over 4 weeks). 2 drains out at 1 week, other 2 at 2 weeks. After first few days, they were never draining more than 20cc total during the day (but pretty consistently 7-9 in a 12 hr period). I was, however, always more swollen on right (cancer/sentinel node removal side) than left. Kinda all over but definitely more on the bottom part of the breast below the nipple (I had nipple sparing), on my side and very much in the front armpit crease (that part right next to the outside part of a bra). I found the more I was up and about, the heavier and worse it looked and felt. However, I still did my PT exercises! The armpit part also didn’t feel good. Really not good. In addition to just heavy and more swollen than other side, it felt a bit like a bad sunburn. Weird because it’s actually numb but even my long hair touching it was bothersome. I didn’t want anything touching it which is difficult when you need to wear a bra 23/7. I really wanted to put an ice pack on it but was told that was a no-no. The good news is that all that has much improved. I can see and feel a big difference over the past week. That armpit part is still more sensitive on the rightbut has gotten much better and both breasts look more equal at this point. Hope that is helpful.

  • anniepnw
    anniepnw Member Posts: 23
    edited February 2023

    pjc - yes, quite helpful, thanks! I understand our bodies are so wildly individual in their reactions to surgery but still, some real feedback is nice, just to see how it might work. I searched the posts on this forum and also in a flattie FB group I belong to, and there's not much information about post-op edema, not at all. A day before yesterday, Fri, was the worst for me; the drainage on this one remaining side was minimal, like 25 ml but I felt that my chest and pits were going to burst at the seams, that's how much liquid was accumulating. Extremely uncomfortable. The surgical nurse looked at the photo in MyChart and said that everything was healing wonderfully and it was all the natural stage of healing. But she asked the doctor the prescribe Gabapentin 300 mg/one a day and I took the pill that night and the next morning was feeling better: the drainage was up, but the edema went down. Now it's a little up again...Arrgh. Even from the limited details I pick here and there it sounds it just goes down slowly, on its own, and there's not much I can do to speed it up. Double arrrrgh. And yes, I keep up with my PT stretches too. The real PT appointment is set for the first week of April, the waittimes are just crazy where I am.

  • anniepnw
    anniepnw Member Posts: 23
    edited February 2023

    Also interesting, I was told to ice away the armpits if I wanted to. I tried. Cold felt nice but didn't do anything tor reduce the swelling.

  • pjc5399
    pjc5399 Member Posts: 32
    edited February 2023

    I was on Gabapentin for the first two weeks (3x a day). I thought it was meant to help with nerve pain. Not sure I noticed any difference when I stopped it. I get little shocks every now and then but nothing horrible. I know for me it’s just so helpful to hear other people’s experiences so I know these “not normal” things I’m feeling are, in fact, a normal part of the major surgery we have had. And, yes, I do need to keep reminding myself it was major surgery and I need to give myself the time and space to heal. Patience is not something I have as a virtue. 😄. I hope your swelling starts improving soon!

  • msp
    msp Member Posts: 6
    edited February 2023

    Thanks. I did see a specialist kinesiotherapist who taught me how to self-drain the lymph. It took several months, but I'm back to normal now.

  • msp
    msp Member Posts: 6
    edited February 2023

    The armpit pain does go away... eventually. It just sucks for a few months. And is so sensitive. Like anything touching your skin is knife sharp.

    Like you said, the ice packs don't really help with lymph drainage, but they are comforting.

    Best of luck and it does get better! Promise!!!

  • anniepnw
    anniepnw Member Posts: 23
    edited February 2023

    Thank you, ladies. Arrrgh, it's all about patience, and I don't have much of it lol. About movement, they actually told me during the appointment last week to limit walking as much as I could and move in slow motion. The reason is, one drain is out, but they want to decrease the output in the second drain that has been producing more from the start, so they could remove it too. Yesterday, I was like, hell with it, I don't think movement impacts the swelling in a bad way, and so I marched in place in front of the tv to avoid fighting yucky weather - 10,000 steps over the course of the day - and the output was still small, 30 ml total yay - so hopefully they will remove the drain this week! As far as I can see, swelling is just edema and does not get worse from careful movement. I noticed that when Gabapentin wears off towards the evening, this is when the edema feels worse, like someone pulls and squeezes my chest muscles. And the armpits get puffed up and hard. So logically, it's nerve pain.

  • lw422
    lw422 Member Posts: 1,399
    edited February 2023

    MSP--same here; I was told to get up and move as much as I could (within reason of course.)

    Annie-- Here's hoping the swelling resolves and you get a good outcome. Hugs to you.

  • lw422
    lw422 Member Posts: 1,399
    edited February 2023

    Annie--woohoo!! I remember how thrilling it was to have that last drain removed! Hopefully the swelling will dissipate soon.

  • msp
    msp Member Posts: 6
    edited February 2023

    I hear you. The expanders aren't painful because I basically can't feel anything on my chest. They are, however, awkward and uncomfortable.

    Like you, I am not someone who handles pain well either. Bring on the morphine!

    I'm going in next week for the first of several ops for reconstruction and already super nervous. *takes a deep breath*

  • anniepnw
    anniepnw Member Posts: 23
    edited February 2023

    msp - Hugs to you. Whatever you do, you know it's your decision and the right choice.